Pam's Story

Pam Potter

© Copyright 2001 by Pam Potter

I was born with the birth defect Arthrogyposis Multiplex Congetia. One in 3,000 people have it. I have photos of how it affects me and my mother and brother.  If you'd like to see them, click here.

At the age of eleven in 1969 I was at Shriners Hospital in Saint Louis, Missouri, more than I was at home. This went on until I was fifteen. I was on Ward B for girls from ages 9-16. There were five regular rooms and two isolation rooms in a circle. In the center was the nurse desk.

 Every morning we had to wait on the doctor's rounds. Then we ate breakfast. If you could walk or wheel yourself to the dinning room you ate your meals in the dinning hall, just a hallway away from the ward.

 Every weekday we went to school. If you were in bed you still went to school. You were pushed to the school room. The only excuse to get out of school was to be on the surgery list or to be recovering from surgery.

I remember the surgery well. You took a bath the night before and got no food the next day. You are given a shot before you are wheeled downstairs by the elevator and left in a dark long hallway. After what seems like a long time you are wheeled into a room, placed on a cold table, then before you know it you wake up and it all over and you are in brightly lit room with rows of other beds with children who had surgery that day too. Just as you drift back to sleep the nurse wakes you up for a blood pressure reading and temperature. Later you are wheeled into the class room, which is dark, and stay there until six in the morning then you are wheeled back to your room.

In 1970 I had the operation called Halo traction, just before my spinal operation.

In the halo traction they shaved my head and stuck screws in my head and my knees with weights on both to stretch me. I could not move, except for my arms and hands. They turned me every four hours and tightened the screws. That doesn't hurt, but you get a head ache. You are given a mirror to watch TV. I was in this halo traction for a month.  I was still in my bed and they wheeled me to school even though I couldn't move.  I had lessons to learn and having surgery in a children's hospital was not an excuse for getting out of class.

I was eleven then and turned twelve in the halo traction.

My parents lived in Tulsa, Oklahoma, and were able to see me one time. I was there from December, 1969, to April, 1970, and had the two operations--Halo traction and then spinal.

For the spinal you are on iron board. You are flat on your back or flat on your stomach. You are flipped like a sandwich several times a day. You get to eat when you are on your stomach. When you are on your back the tray is left beside you and you eat the best way you can.

The next step to a spinal is the body cast. I was in that for nine months. I went home during this time.

 The final step is the corset. You wear it for a while, but not long.

I had several foot and hand operations there also, between 1969-1973.

 If you know of a disabled child, Shriners Hospital is the place to go. I would not be alive if my parent's had not sent me. It's free.

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